His differences became apparent as early as 18 months, when his aggressive behaviour began to frighten his peers, and their parents. When he was two years of age, Hollie began voicing her concerns about Cooper’s behaviour, which was frequently dismissed as “just a stage”. But this “stage” continued and daycares were denying services.
NOT "JUST A STAGE"….
After one month at preschool, a teacher handed Hollie the intake number for Queen Alexandra (QA) Centre for Children’s Health. Just before his fourth birthday, Cooper was diagnosed with ASD. Though nobody knows what causes autism, part of Hollie was relieved by a diagnosis: now, at least, she knew what she was dealing with.
Living with Cooper is “exhausting, frustrating, and joyous”, says Hollie. She points out that Cooper’s personality is huge and people really like him, but trying to stay a step ahead of him is full-time (24/7) venture. “Cooper is kind of like a typical six year old, except times a hundred.”
The Early Intensive Behaviour Intervention program at QA had an integrated team of professionals for each child: 2 behavioural interventionists, behavioural analysts, speech pathologists, occupational therapists, and social workers. Team members all had regular, daily contact with one another about each child’s file: services valued around $60-$70 thousand per year.
Cooper attended therapy for about 20 hours per week. Hollie, and other parents of other children in the program, were amazed to see children that they thought would never be ready for kindergarten were making amazing leaps of development in mere weeks.
Unfortunately, in the autumn of 2010, the Early Intensive Behaviour Intervention program was eliminated. Instead, parents of autistic children were allotted $22,000 per year from the Ministry of Children and Family Development to arrange and manage all services themselves.
With centres shut down, parents are left to piecemeal together services for their children; services that have no oversight and no communication between service providers. Ultimately it means that the Province was saving money by making the parents not only care providers, but also therapists, and case managers; not to mention financial wizards they needed to be to get the job done with one third of the money needed.
FACING A LIFETIME OF ADVOCACY….
According to Hollie, the decision to cut these programs was “short sighted” because proper therapies for children with autism will save money by avoiding long term social impacts to social assistance, health care, and the judicial system. Already, many of these children are regressing, losing language and social behaviour skills they gained in the program. Some kids are losing basic toileting skills. Certainly, other parents must agree with Hollie’s assessment that this is “very sad and disheartening. We really grieved the loss of this program for our son.”
The need to advocate begins with the early services for proper assessment and diagnosis; and continues through the school age as the school system is not prepared, trained or funded to handle these special-needs children in their already over-full classes.
A CALL TO ACTION….
Hollie recognizes that it is not just autistic kids who are not receiving the services they need – British Columbia has many vulnerable children. However, like any mother, she is fighting for her child.
Hollie asks that people get educated and ask questions of their elected officials. She encourages people to write to their MLAs, to the Minister of Children & Family Development, to the Premier. For people who do know about autism and its effects, send letters to the editor – “get loud”, encourages Hollie. Email bcautism@gmail.com for a letter template.
Hollie, along with other parents and adults living with autism, have set up a group called Families for Autism Intervention Resources (FAIR). They have, as a group, met with the previous Minister who indicated that it would not be responsible for government to fund these programs. FAIR feels that it is the other way around.
For information or to get involved, visit FAIR on their Facebook page. They are looking at the feasibility of setting up a non-profit to offer services like those lost from the Queen Alexandra program. Hollie says “our group is not going away; there is a core group of parents that are committed to fighting to get services for their children.”
To get mailing addresses for Provincial MLAs and Minsiters: http://www.leg.bc.ca/mla/
